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Sunday, 17 February 2013

Outrage and disgrace in the UK: NHS genetics database laws allow selling people's health data against their will to private companies

Yes, apparently, the safeguards put into place in the UK laws and rules around a planned national genomic database – created out of the biological samples collected from people in the regular process of sample taking and diagnostics for regular NHS health care purposes – to protect individuals from undue harm and integrity breaches are far less than satisfactory. They provide ample room for commercial companies to purchase individual and identifiable genetic information without any consent of the people concerned. At least, this is what an analysis performed by the independent investigative platform Ethics and Genetics suggests, and the claim is solid and credible enough to be outed today in a lengthy article in The Guardian.

To my eyes, from what is brought to the fore by these two documentations of the matter, this is a major scandal, outrage and a disgraceful – yet predictable – consequence of the completely irresponsible hurry with which the government of David Cameron has tried to tear down the barriers between, on the one hand, genuinely societal public interests and common goods and, on the other, the the petty interests of private entrepreneurs and business operations to make another little bit of money with regard to the health and health care related needs of ordinary people. It is, to my eyes, particularly mind-boggling that a representative of what is supposed to be a conservative political party is unable to see and uphold this elementary distinction.

The easily identifiable root of the problem is, of course, the completely mindless notion of there ever being any such thing as a viable interest of a commercial party to access any of these data without consent. There are indeed cases where access to an identified individual's genetic or other health data without consent may be warranted for truly public and overwhelmingly important interests, and one may even imagine that such interests would include pure research and not only security related actions, such as in the case of communicable disease emergencies, or compassionate ones as in the very rare case of individual needs of quick diagnosis that may require access to data about relatives. However, this access would then be granted (after due scrutiny to grant permission) to institutions appointed or accredited to serve the same public interest, such as public health authorities, public hospitals, licensed doctors in care of the patient in question or, in the case of research, universities.

However, if commercial companies want to access people's genetic data for whatever purpose (several of which can easily be imagined not to be in the interest of the same people), it is their business to persuade people to provide such data to them after due information about the pros and cons, risks and befits – including the recent findings that anonymising of such data is much more difficult than previously believed. For a government to allow such access without consent would clearly violate central human rights in their UN as well as their EU variants, and in addition the Helsinki Declaration. Aside from being completely immoral in its own right regardless of what minimally decent ethical system you apply, of course.

So the solution is very simple. Amend the law with a strict and overriding ban for any commercial party to access the information stored in the planned national genomic database, and a similar ban for any party with legitimate access to give commercial parties secondhand access. This allows for all of the things in the public interest and to the benefit of the common good, such as research to develop new treatments and drugs that one may wish for. It's just that commercial companies will have to outsource some of this work to, e.g. public hospitals and universities, without gaining access to the data that they work with, while of course reaping the harvest in the form of developed products to sell.

2 comments:

Time to license and tax the data sellers, like sales tax model so consumers can at least have a site to look up who sells what kind of data to who and doing quarterly cuts out income tax loops companies use too.

I have to say this would make me particularly annoyed if someone were to sell any of my data, let alone my medical data. I would imagine there are huge legal implications for any organisation doing this, and should people find out about the shoots immediately seek legal advice